Tuesday, June 30, 2015

The State of the Blog: Year Two


    Sophomore year is always tough.
    The dewy newness of the freshman is gone.
    The confidence and wisdom of junior year—maybe spent abroad, exploring new worlds—is still off in the hazy future, provided you can get across the long bridge of hard work between here and there.
    The first week of my sophomore year at Northwestern I got in a fight with a member of the varsity basketball team and spent about three months sorting it out in mediation. Then came what is considered the worst winter in Chicago history; 90 inches of snow fell. "Extremely brutal" is how one news organization put it.
     I toughed it out. 
     So it is with the second year of this blog, which I've come to refer to in tweets as EGD, which ends today. I'm tempted to call it my "fiscal year" but that would suggest this is an economic endeavor, and it really isn't. We did sell more ads this year than last—not only Eli's Cheesecake, which repeated its generous support in November and December, but the Ashman & Stein law firm, Bridgeport coffee, and Chicago Mailing Tube. The latter two paid in product. "I am rich in coffee," I've said, on a number of occasions, scooping dark, oily beans into the grinder for the morning pot. 
     How did I do? The numbers are up. Year One brought 385,679 hits, or 1,056 a day. Year Two brought in, as of Monday night, 499,423 hits—half a million by the time you read this— or 1,368 hits a day, a smidge more than 25 percent improvement. I'm not a businessman, but 25 percent is a good gain for the year.
     Statistics can be deceiving, though. Yes, January was my best month—51,000 hits, and it seemed a milestone to pass 50,000 hits a month. But thousands of those were spambots -- I could tell by seeing the garbled come-ons that land in my spam folder. They latch onto certain posts for reasons mysterious. I can't tell you how dispiriting it was to notice action regarding a certain post—"Hey, lots of people are clicking on my Rocks for Fun report on that strange pasty cafe in Wisconsin. It must have gotten linked to by some Wisconsin tourism site!"--only to realize it's the work of robot web spiders hunting dupes.
     The bad news seemed to outweigh the good, as befitting sophomore year. Poster sales sagged. I sold about 30 the first year. This year I sold 8. I do plan to fill a tube, jump on the Divvy, and put them up on the boardings around construction sites in obscure parts of the city. But haven't gotten around to that yet.
     There is value that can't be measured. Not to other people; I'm not the one to judge that. But to me. When I wrote about Amanda Palmer, the singer, the paper was going to give it a full page, then ended up with a very unsatisfying 700 words. But I ran it full strength, 1,500 words, on the blog, and would have felt terrible were that outlet not there (Palmer's husband, the fantasy writer Neil Gaiman, not only retweeted the post to his millions of followers, but sent me a nice note, which felt like validation).
     I will admit somewhat sagging both in energy and in spirit. In the spring, I finished my next book for the University of Chicago Press, or more precisely, got about as close to the end of the year-long Zeno's Paradox process of securing the 80 or so legal permissions I need to print all the poems and songs and such that I quote without being sued. That, and the big piece for Mosaic, the London science and health web site, plus the column, plus this — it suddenly felt like a lot, and the endless spring of verbiage that I've been filling into jugs for years suddenly seemed a bare trickle.
    Some days are very quiet—or the dozen people who hang around the comments section are always jabbering away, but the greater world is generally completely indifferent. And I begin to wonder if I'm creating a product—essays of a thousand words or so—that isn't wanted anymore. It's an antique form, like a villanelle, a dead fashion, like top hats.
     So time to hang it up? The blog can be cut loose, like an iceberg breaking away from a glacier, to drift off melting in the vast ocean of the Internet. I've created this little island of my work, but like Tom Hanks, I'm going to die here if I don't lash together a raft and try to get myself back to civilization.
    Not yet. In looking over the past year, trying to figure out whether the writing was something to be proud of, or just more Internet crap, I stumbled upon this post from Jan. 20, "These are not dark days," about the state of the newspaper. I had forgotten I wrote it—six months of writing will do that—and read it with simple interest, as if it had been written by someone else. I was impressed by its candor—difficult to assess the place you work at—and thought its Churchillian conclusion, "Never give up," might be apt here. It's not that I can't quit. I think I don't want to, not yet. This is still fun, most days, and still growing, robot spiders be damned. 
    And the bottom line is, this does have a purpose, to have a platform up and ready in case ... choosing his words carefully ... others platforms I'm on becomes unavailable. You don't stop painting the lifeboats just because the ship is still sailing, for now.
    Also, a million hits is out there, sometimes in November at this pace. Like 50,000 hits a month, that seems something worth getting, ignoring the hard fact that a photo of Kim Kardashian's ass will do a million hits in an hour. 
     I can't write anything as dramatic as Kim Kardashian's ass, apparently. But I can try. And I'm a big advocate of that. "For us, there is only the trying," T.S. Eliot wrote in "East Coker" "The rest is not our business." 
     That sounds like a plan. So I'm going to try for a third year. Maybe junior year will be for me, as it is for so many others, when suddenly everything snaps into focus and the point of this endeavor becomes clear. It sure ain't here to sell posters.


Monday, June 29, 2015

Is Chicago a wheel city?

 
London Eye
     I've been to London, and seen the London Eye, and dismissed the 450-foot tall Ferris Wheel on the banks of the Thames, as many Londoners do, with a shudder of revulsion, as an out-of-place monstrosity that fits in the city of Christopher Wren like a steam calliope at a formal church wedding.
     That goes double for the Ferris Wheel at Navy Pier. which manages to be underwhelming and garish at the same time. At 150 feet tall, it rises to the height of a 15-story building. Which might be a big deal in Omaha. But the city that created the first Ferris wheel, at the 1893 World's Fair, could have done better.
     That one was unique in the world; this one is a nostalgic parody, a feeble homage, like those Al Capone bus tours.
     I rode it again last summer, in my role as benevolent tour guide, squiring a young country cousin. As we inched upward, in the wheel's slow rise, a view unfolded almost identical to the view you get standing on the pier, except you're $8 poorer.
     Perhaps it's thrilling for 4-year-olds. Otherwise, put it in the classic Chicago tradition of fleecing the greenhorns.
     To better accomplish this task, the Navy Pier folks announced last week they are replacing the wheel with a bigger one.
     First, a confession. My grumpiness on this topic must stem from my being in that time of life when things once thought permanent are suddenly wearing out. We have a lovely Herendon sofa, bought at enormous expense at Marshall Field's in the early 1990s. The fabric, a thick, rich green material, depicting ferns, like something from a medieval tapestry. The sofa seemed destined to last the centuries and end up displayed behind a velvet rope in a gallery.
     Instead it's battered and threadbare, banished to the TV room, the split cushions hidden under blankets. Put it out on the curb and nobody would touch it.
     So clock hands are spinning, calendar pages fluttering to the floor. And now the Ferris wheel at Navy Pier — which I watched being built as a metro reporter—has seen its day and will be torn down in the fall. Not because it is worn out, thank God, but because it isn't big enough and the cars are open.
     Again, a disconnect. The cars being open is the only bare value you got for your eight bucks. Yes, you were being taken 1/8 of the way up the Willis Tower. But at least you were outside. There was air and a tiny frisson of acrophobia.
     Now riders will be sealed in heated and cooled cars, so the tourists packing Navy Pier can seek escape by taking Ferris wheel rides in February.
     Is there a demand for that? I can't tell. Navy Pier's popularity is a puzzlement to me. I can't write about it without mentioning a strong memory from the late 1980s: walking the length of the pier's dark, desolate, abandoned ruin, thinking, "They're turning this into some tourist Mecca? That's crazy. Nobody's going to come here."
     The most popular tourist attraction in Illinois. Mobs of tourists rush past the Art Institute and Millennium Park to get in line at Bubba Gump Shrimp. Again, maybe this is age talking. When the boys were small, back in the 1990s—the last century!—we did enjoy the Children's Museum and the Winter Garden. But for the past decade, the only time I visit Navy Pier is when I'm rushing, late, to go on the radio at WBEZ, way the heck at the end of the pier. Pushing through this dense, milling crowd of Iowan families as they waddle from McDonald's to the teddy bear factory, the air cloying with the scent of sugary nuts, it's all I can do to get to the station without having my eye put out by a churro.
     They're building a bigger Ferris wheel. Question: If ours is 150 feet tall now, and London's is 450 feet, and Vegas' 550 feet, and New York is building one 630 feet, how big will the new Ferris wheel at Navy Pier be? 300 feet? Maybe 500 feet? Or 700 feet? If the wheel were proportional to our civic self-regard, it would be 1,000 feet tall.
     No, 196 feet. Only a little bigger. How that's worth the $26 million it'll take to do is a mystery to me. But then again, the whole darn thing's a mystery to me.

Sunday, June 28, 2015

"We really do get it right sometimes"

John Fliszar and Mark Ketterson

     There will be a lot of hoopla today at the Gay Pride Parade, and rightly so. The Supreme Court deciding to recognize the basic humanity of gays and lesbians is a cause for celebration. And up until late Saturday I was going to post a festive look at the parade.
     But I got to thinking. This is an important moment, yes, for wedding vows and sugary cake and love. But it also represents a serious acknowledgement by society, one that is a few thousand years overdue. 
     To underscore that, I'm reprinting a column I wrote in 2011. At the time it was given most of front page of the Sun-Times, because it was surprising that the Navy would treat this gay vet's husband with respect. Treating a deceased vet's spouse with respect was news. Now it's the law of the land. Look how far we've come in four years. Today the only strange thing is that anyone could be against it. But people are. Remember, all Republican presidential candidates are vowing to fight this overdue show of human decency, to one degree or another. Victory doesn't mean the battle is over, because there are still those who would take it away. They'll fail, but that doesn't mean they won't have to be vigorously opposed. Not today, today is for celebrating. But soon the work continues.

     John Fliszar had a heart attack in 2006 and was rushed to Illinois Masonic Medical Center.
     "When I was in the emergency room with him, he asked me to promise him, if he died, to make sure his ashes were interred in the Naval Academy," said Mark Ketterson. "He loved that place. He very much wanted to be there."
     Fliszar, a Marine aviator who served two tours in Vietnam, survived that heart attack. But last July the Albany Park resident suffered another one that killed him at age 61.
     Hoping to fulfill Fliszar's wishes, Ketterson contacted the U.S. Naval Academy at Annapolis and told them that Fliszar, Class of '71, had wanted to have his ashes interred at the USNA's Columbarium, a serene white marble waterside crypt next to the school's cemetery.
     The memorial coordinator asked about his relationship to the deceased. Ketterson said that John Fliszar was his husband.
     "They were always polite, but there was this moment of hesitation," Ketterson recalled. "They said they're going to need something in writing from a blood relative. They asked, 'Are you listed on the death certificate?' 'Do you have a marriage license?' "
     He was and they did, the couple having been married in Des Moines when gay marriage became legal in Iowa two years ago.
     Ketterson sent a copy of the marriage license. That changed everything.
     "I was respected," he said. "From that moment on, I was next of kin. They were amazing."
     The USNA alumni association sent Ketterson a letter expressing condolence for the loss of his husband.
     The USNA says Fliszar's interment followed standard operating procedure.
     "His next of kin was treated with the same dignity and respect afforded to the next of kin of all USNA grads who desire interment at the Columbarium," said Jennifer Erickson, a spokesperson for the academy. "We didn't do anything differently."
     Shipmate magazine, the publication of the USNA's alumni association, ran Fliszar's obituary. It noted his two Purple Hearts for "having been shot down from the sky twice in military missions." It noted "for the rest of his life he would joke about his 'government issued ankle.' " It noted "his burly but warmly gentle manner." It noted he was "survived by his husband, Mark Thomas Ketterson."
     "The word 'husband' in the obituary has created a bit of a stir," said Ketterson, a Chicago social worker. "I've heard from a number of officers. It's been amazing. This has not been absolutely confirmed, but I think I'm the first legal same-sex spouse who planned a memorial."
     The memorial service was held in October, in "the beautiful, beautiful Naval Academy chapel," said Ketterson. A uniformed officer stood in the back and played taps.
     "They did the standard military funeral, a wonderful service," said Ketterson. "Since I was the designated next of kin, they were going to present the flag to me, but I deferred to his mom. She gave it to me."
     One of the groups Ketterson heard from afterward was USNA-Out, the organization for gay graduates of the naval academy.
     "From my perspective, attitudes and actions are changing at the Naval Academy and certainly at the alumni association," said Brian Bender, chair of USNA-Out, observing that while he "can't speak for the Navy as a whole, we do interact with active-duty Navy folks, and they check in with their chain of command."
     I tried to find someone who could speak for the Navy as a whole, but with whatever era replaces "Don't Ask, Don't Tell'' still in its infancy, well, let's say that Navy communications specialists are not jostling each other for the chance to address this subject.
     While the public generally approved of the official end of "Don't Ask, Don't Tell'' in the U.S. military, the details still need to be worked out. The thorny issue isn't ending the costly and counterproductive practice of forcing gays out of military services—that cost $40 million a year to enforce and deprived the armed services of thousands of qualified personnel. A bigger challenge is the question of entitlements: Who is a survivor? Who gets military benefits?
     A marriage certificate was the key that let the USNA know how to treat Ketterson in relation to his husband's service. Gays in the military and gay marriage are thought of as separate issues, but without legal gay marriage, or at least civil unions, how can the military know who gets the folded flag?
     Such practical concerns were far from Ketterson's mind when he and Fliszar got married after dating for six years—"because I loved him and he asked me," Ketterson said, adding that the USNA alumni he's heard from have made grieving more bearable.
     "It's been some months. I'm still doing mourning," Ketterson said. "As a gay man who grew up in a military family, getting communications from USNA, having heard from alumni who say, 'You will always be one of us'—that's powerful, and healing."
     "One of the e-mails said that I was a 'trailblazer,' '' said Ketterson. "I didn't blaze any trail. I buried my husband."
     That said, he still finds himself marveling at how it all unfolded.
     "I am a patriotic American, but I know this is not a perfect world," he said. "The point is, when the chips are down, when the issue was patriotism and honor for a veteran, they were wonderful. Whatever their private feelings, they made me proud to be an American. We really do get it right sometimes."
     —Originally published in the Sun-Times, Jan. 30, 2011

Saturday, June 27, 2015

Why the Gay Parade is not only fun, but important. Still.



     On Friday, the Supreme Court recognized the right for gays to marry throughout the 50 states. Make sure you don't miss the laughable legal somersault John Roberts does in his dissent, basically saying that acknowledging this Constitutional right deprives each state the joy of crawling toward that realization on their own. Boo-fuckin' hoo. 
     Sunday is the Gay Pride Parade, and while the ruling guarantees it will be an extra joyous one, at some point someone will ask, "Hey, now that this right is finally won, do we really need to march?" 
    I'll field that one.
    Short answer, yes, as laid out in a column about the 2011 parade (which, sharp-eyed readers of my Chicago memoir, "You Were Never in Chicago," might recognize as the parade that appears at the end of the book).

     When I told a neighbor that I would be riding on a float in Chicago's 42nd Gay Pride Parade Sunday, he grinned giddily, fluttering his fingers in front of himself and trilling an effeminate "hoo-hoo!" noise that I guess was supposed to be an imitation of a gay man.
     And some wonder why there's a parade . . .
     I didn't correct him or challenge his thinking. "Gee Biff, that offends me and offends the dignity of gays, lesbians, transgendered, bisexual and non-determinate people everywhere." That isn't my style. Too timid. I even may have laughed along, shamefully, caught off guard by this sudden ugliness, and stymied by the conviction, had I argued, that rather than shift his view of gays ("Gosh Neil, thanks, I just never thought about it in those terms...") I'd just tar myself as a humorless ideologue in the thrall of the gay agenda.
     Which I'm really not. To be honest, I couldn't care less about other people's sex lives, and it also shocks me that there are those who do, passionately, feel that the Lord God Almighty is ordering them to stick their big bazoos into the personal business of others.
     Don't they know their history?
     It didn't start with gays, you know. Remember bastards? It's a general, low-level insult now, but once it was a specific legal term - a man born out of wedlock - with implications regarding his right to inherit property and marry. The rules are in the Bible.
     "A bastard shall not enter in to the congregation of the Lord," Deuteronomy 23:2 tells us, "even to his tenth generation shall he not enter into the congregation of the Lord."
    Society doesn't fret about bastardy anymore. Ditto for divorcees. Things change.
     Gays are next in line to be let off the Bible-based hook, and it's been fascinating these past 20 years to see them shedding their pariah status. As with previous biases—against blacks, against women—the iron law began to melt. When I joined the paper, we wouldn't list a gay partner as a survivor in an obituary, not even if they had been together 30 years. It was policy. Kind reporters would get around that by quoting the survivor as "a longtime friend." AIDS changed that; with so many gay men dying, denying them this final shred of dignity seemed pointless and cruel. And now New York State is allowing gays to marry.
     Among the first people I talked to Sunday after I joined the throng pouring from the Belmont L station was Kelly Cassidy, state rep from the 14th District. She told me that someone had broke into the warehouse where the parade floats were stored last night and slashed the tires of 51 floats. I replied that this had to be a hate crime.
     "It's hard not to think so," she said. "After the huge victory in New York, with so much to celebrate . . . The first parade had no floats. There were no go-go dancers. We don't need floats to have a great parade."
     The vandalism discouraged no one whom I spoke with. The general opinion is that Illinois will follow New York in legalizing gay marriage.
     "It's going to be coming soon," said Jacob Meister, founder of Civil Rights Agenda, an advocacy group whose float I rode on.
     I thought of the Nazis who had gathered outside the dedication of the Illinois Holocaust Museum, unwittingly underscoring the need for such a place. Ditto for the slashers—a grim reminder that gay people don't march in the street once a year because they're exhibitionists. During the AIDS crisis, they were marching to save their lives, and now they're marching to insist that those lives and loves have as much worth as anybody else's.
      Seeing the parade from a float was pure fun. The whumping Lady Gaga music, the sea of waving, smiling, joyous people—gay and straight, young and old, every color, everyone having fun. I waved and clapped and yes, shimmied a bit. How could you not?
     Correction: not everyone had a good time.
      "Repent heathens repent!" a man yelled through a loudspeaker. "God hates all of you! Jesus Christ hates every single one of you! Homosexual sex is demonic sex! You're demons!"
     This wasn't the Westboro Baptist Church, but the Street Preachers, sort of a Westboro Wannabe. A bearded man among them asked me if I believed what the speaker was saying.
     "No," I said.
     "Why not?" he demanded.
     I paused, thinking. "It's like what Louis Armstrong said when asked to define jazz," I said. "'If you have to ask, you'll never know.'"
     That seemed to puzzle him, but I walked away and left him in his confusion. My job isn't to take every idiot by the hand and try to make him see the light. That said, the next time somebody does one of those pinky-lifting lisping bits, I'm going to assume the most steely glare I can and say, "That's not funny."
     —First published in the Sun-Times, June 27, 2011

Saturday fun activity: Where IS this?


    Can you make out the guy in the above?
    Here, I'll blow him up for you. 
    There, that's better.
    A hooded figure.
    A monk perhaps.
    Certainly a clue as to this solid building.
    Maybe you've seen it.
    I didn't notice it until this week.
    And I pass the place all the time.
    Which is one thing I love about Chicago.
    All this hidden stuff.
    Hidden in plain sight.
    I won't wax nostalgic about the extra care these older buildings show. 
    No hooded figures above the windows today.
    Economics, laziness and I suppose a bit of cowardice.
    Who would have the courage to put hooded figures on their buildings today?
     Mysterious men who could represent anything.
    Enigmatic gentlemen
    Whom we could project our fears upon.
    Enough noodling.
    Where is this? What building? 
    If you know there's a 2015 poster in it for you.
    Place your guesses below.
    Good luck.
   

Friday, June 26, 2015

Is there a right to die?

     John Loder was a sound engineer in London. He recorded high volume rock bands like Big Black, so perhaps it was not surprising that he frequently had headaches.
In 2003 the headaches got worse, and he was diagnosed with a brain tumor: malignant, inoperable.
     It took him almost two years to die.
     "In August 2005, my mum called me and said he can't get out of bed," said his daughter, Natasha Loder. "They took him to the Institute of Neurology in London. He had the brain scan, and we got called in. The doctor said, 'Look, the news is grim. The tumor has gone from a golf ball to a grapefruit. He's going to die soon.'"
     Loder was telling me this because she is the health correspondent for The Economist, the British news magazine which Friday publishes "The Right to Die: Why assisted suicide should be legal," detailing how the push to allow patients to make end-of-life decisions is gaining traction across the developed world. California might make it legal later this month.      I've known Loder for four years since she arrived in Chicago, and she never before flagged a subject that the magazine is featuring.
     But this one is personal, even though her father's end was better than many.
"It was a relatively quick death, a good death," she said. "Over the last few days, he was dying, it was clear he was dying. But one of the things about brain tumors, it makes you sleepy, so that was kind of wonderful. We didn't know if he was conscious, but he seemed to respond to our touch."
     John Loder was 59. His end was relatively peaceful. But what if it hadn't been?
     "It wasn't until afterward I started feeling quite angry, that there was never any option for him," said Loder. "Nobody is fighting for the rights of the dying."
     The arguments against assisted suicide are familiar: that it's a slippery slope, leading straight to euthanasia and the Nazis. That poor people and those who don't want to create a financial burden will embrace it. That elderly people will be pressured by their families. That it implies people who are severely disabled can't have quality lives.
     The best counter argument is this: assisted suicide is already legal in three states — Oregon, Vermont and Washington State — and permitted in Montana (it was briefly allowed in New Mexico but now is in legal limbo) and these problems are not widespread. Only about 1,100 people have gotten Death With Dignity prescriptions since the law went into effect in 1998.
     "Oregon isn't a slippery slope," said Loder, pointing out that just knowing the option is available is a comfort to the dying.
     "This takes away the fear from death," she said. "Of the people who have been given the drug in Oregon, two-thirds took it and one-third never took it. They just wanted it there, to know, 'If this is ever too much for me, I could take it.' "
     The Economist polled 15 nations about right-to-die: the majority of citizens in 13, including two-thirds in the United States, support it, with only Russia and Poland against.
"There's a lot of support," Loder said.
     Given how the discussion of Obamacare pivoted on an idealized view of health care: waving the boogeyman of socialized medicine at people who don't have any health insurance at all, it'll be interesting to see if this subject is the next moral issue to make headlines. But the reality is there.
     "We don't all die at age of 90 in our sleep after a wonderful life. For a lot of people dying is terrible," Loder said. "My father was relatively lucky, but had the cancer been somewhere else he could have been in agony. Many people are dying long and protracted deaths, full of suffering and loss of dignity. It could happen to you, it could happen to me, it could happen to anybody."
I said that in American we have a far easier time dictating what other people do based on our own moral values, and a much harder time with anything that suggests people have the right to apply their own values to their own lives.
     "Let's have the debate," she said. "You do live in a democracy, and most people do support the idea of being able to help those who are terminally ill have choices."

Thursday, June 25, 2015

Giving the bird to the world

 
Photo by Michael Kienitz
  

    One of the most common illusions that can trouble newspaper readers is the notion that the front page is the serious venue for the most important news of the day.
     It is that, mostly. But not completely. It's also the face of a paper, hopefully an appealing face, and occasional a smile should be allowed, for variety's sake.
     Thus I was happy to see Don Featherstone's obituary on the front page of the New York Times Wednesday. 
     Featherstone was, I learned, in Margalit Fox's whimsical send-off, the inventor of the pink plastic flamingo, which he designed when he was a 21-year-old employee of a lawn ornament company in 1957.
    Not the most earth-shattering accomplishment, true—to be honest, the fact on which his fame was based is not half as interesting, in my estimation, as the part of the obit that mentions that he and his wife wore matching outfits every day since the 1970s. Tell me more about that.
      There was something else that cried out for elaboration: "In 2009, after a debate of five minutes, the Common Council, as the city council of Madison, Wis., is known, voted 15 to 4 to designate the pink plastic flamingo the city's official bird."
     Yes, but why?
     The obit hurried on—no shame there, you can't pull every thread—but I thought I'd share my special knowledge of exactly why that particular city might select that particular lawn ornament as its civic avian mascot.
     Here is the cover of my first book, a history of college pranks published in 1992. The photo is of Bascom Hall, on the University of Wisconsin at Madison campus, on the first day of class in 1979.
     What's going on here? In spring of 1978, a pair of costumed clowns, Jim Mallon and Leon Varjian, had run for the presidency and vice presidency of the Wisconsin student government as a kind of performance art. They called themselves the "Pail and Shovel Party" and, to their surprise and delight, won.  
     The pair studded their first term with a variety of gags, including construction of an enormous replica of the Statue of Liberty's arm, from the wrist up, and head, from the bridge of the nose up, jutting out of the ice of frozen Lake Mendota, to fulfill a campaign promise to bring Lady Liberty to campus. 
    In the spring of 1979, despite grim resistance from the joyless good government types and the fusspots at the student newspaper, The Cardinal, the duo was re-elected to a second term. That deserved celebration. As I write in the book:
     In the fall, Pail & Shovel hit the ground rolling. The first day of classes, students were welcomed by over 1,000 pink plastic flamingos planted on Bascom Hil, the quadrangle in front of the dean's office. Students gaped in wonder. The birds may have been "blown north by Hurricane David, Varjian speculated.
     The flamingos were a wonderfully ephemeral prank. They had been set up at eight in the morning, and at first formed a uniform field of pink—people said it looked as if Pepto-Bismol had been poured over Bascom Hill.
     Almost immediately, however, the birds started disappearing. People would stop by, admire the hill, and grab themselves a flamingo. By 2 p.m., the entire flock was gone, though individual members were spotted around campus for years to come—in the windows of fraternities, on the roofs of dorms, everywhere.
     "It was a fitting end," Varjian said.
     You seldom hear about clever college pranks nowadays. Perhaps students are too focused on preparing for their musical chairs job hunt. Perhaps our focus on security makes any misbehavior too risky. Perhaps the pieties that good pranks pushed against are gone. But I couldn't let the passing of the originator of the pink plastic lawn flamingo go by without noting one of his creation's finest moments. 

Wednesday, June 24, 2015

Rebel flag not blowing away soon

 

     Dylann Roof did not kill nine people with a flag.
     He used a .45-caliber Glock pistol.
     But nobody is talking about keeping weapons out of the hands of murderous madmen.  

     That’s impossible. We can’t even try. We can’t even talk about trying.
     We can, however, go after the Confederate flag.
     Maybe that’s the best we can do.
     Only we can’t do that either.
     “Winds shifting on rebel flag” the Tribune headlined Tuesday.
     Pretty to think so. They’re reacting to news that South Carolina Gov. Nikki Haley called for the flag to be removed from its prominent place across from the State House in Columbia. Apparently the photos of Roof preening by Confederate flags prior to his alleged crime was too much in the wake of the slaughter at the Emanuel African Methodist Episcopal Church in Charleston.
     But anyone who thinks the matter is settled hasn’t been paying attention.
     Winds of change? Winds certainly. Southern windbags have been blowing hot over this topic for decades.
     But change?
     Change is slow everywhere.
     But particularly slow down there.
     It’s a tradition. Another Southern tradition.
     Does the governor getting involved mean anything? Happened before. In 1996, when the flag was still flying from the state capitol dome, then-Gov. David Beasley called the rebel flag “a racist tool” and pushed a bill removing it. He asked South Carolinians if they wanted their children to be debating this issue in 10 years.
     The answer was “yes.” Beasley’s bill found no sponsors, and he was booted from office.
     Only after the NAACP boycotted the state in 2000 — it set up checkpoints along roads leading into the state and urged motorists not to spend money there — did officials take the flag off its capitol dome and plant it in an even more prominent spot where it is today.
     “Off the dome and in your face!” flag supporters chanted.
     Notice that dynamic. Banished here, reappearing there. You almost have to admire the resourcefulness. Bigots lie, even to themselves. They don’t say, “We hate black people, and the Confederate flag is the embodiment of that hate.” No they invoke history, tradition.
     But what is that history? The flag began representing disunity and treason, the war to dismantle the United States of America in 1861 by 11 Southern states who couldn’t see their way clear to participating in a democracy where blacks were not held in perpetual chattel slavery.
     After the war — which I should point out, the Confederacy lost, another fact that seems to elude them — the flags were furled, only to be brought out as symbols of the Ku Klux Klan, waving the Confederate flag for 100 years. Then a raised middle finger to the federal government. The flying of the Confederate flag at government buildings is a fine old Southern tradition that goes back to … 1956, in Georgia, when the faint echoes of Brown v. the Board of Education started to be heard. The Alabama official who ordered it raised in 1963, to coincide with a visit of attorney general Robert Kennedy, called it “an act of defiance.”
     All this is laid out in a riveting 2005 volume, The Confederate Battle Flagby John M. Coski. To give you an idea of how the flag’s post-Appomattox life dwarfs its wartime duty, in Coski’s book, the Civil War is over by page 44. The next 330 pages riffle with the gusty debate we’re having now.
     Who wants to bet we won’t still be breezing about this in 2030?
     Sure, the rebel flag has been put to innocent uses, splashed across the General Lee, waved by unthinking, proud-of-my-grandpappy Southerners who can’t or won’t wrap their heads around what the flag represents. And when I was 7, I made myself a Nazi armband with crayons because I thought the uniforms were cool. But my parents educated me. That a hateful symbol can be wielded by the disingenuous and the naive does not negate its hate.

     The Germans put away their swastika. The Japanese never learned that lesson, preferring to deny their history, and we see the rising militarism there. Racism fought for its life in the Civil War under the Confederate flag. Defeated, it did not die, and that flag remains a symbol for bigotry.
     Sure, the rebel flag might flutter from its spot across from the State House in Columbia, South Carolina. But keep an eye peeled. It’ll be found flapping somewhere else. Because the bigotry it symbolizes is still at gale force.


Tuesday, June 23, 2015

Face fear


    Five years ago, when Sgt. Edward Schrank was returning to civilian life after serving in the Marines, a mutual friend worried he might have a hard time finding a job—part of his face is missing—and asked me to help. I doubted what I could do, but felt I had to try, so began taking Ed to City Club luncheons and such, introducing him around. 
     I suggested to Ed that he go to the University of Illinois at Chicago Hospital's Craniofacial Center and get a facial prosthetic made, to put future employers at ease. He was very much against this, as you can tell from his interview, one of three with disfigured persons that follow this article.
     Talking to Ed made me wonder if he might not be a vanguard, whether disfigured people could be developing the kind of strong identity and pride found in the deaf community. So when Mosaic asked if I'd like to write something, I suggested looking into disfigurement. The facts took me in another direction, as you'll see, and it ended up a very different story than how it began.
     This article is also being published in Mosaic , the Wellcome Trust's web site of health and science. They encourage distribution of their stories, and it is republished here under a Creative Commons license, which means you are free to repost or reprint it as you like, with the only requirement being that you credit Mosaic and link back to the original piece, which has its own set of compelling illustrations, commissioned by the web site. Mosaic publishes a new long form article on topics of health and science every week, and I recommend that you add it to your list of essential reading.

     “Take your ear off for me, please,” Rosie Seelaus says to Randy James, who is sitting on a black exam chair in a special room designed for viewing colours in the Craniofacial Center on the Near West Side of Chicago.
     He reaches up and detaches his right ear, which she created for him out of silicone seven years before. The ear is shabby, stained from skin oil and mottled by daily use. Viewed under various lights in the neutral, grey-walled room – daylight, incandescent, fluorescent – it remains a pasty beige.
     James is a doctor with the Department of Veterans Affairs in Las Vegas – the fierce desert sunlight is also tough on his prosthetic ear. Seelaus is an anaplastologist, a clinician who sculpts artificial body parts for people who have lost them through injury or disease or, as with James, who never had them to begin with.
     He was born 58 years ago with Goldenhar syndrome, a genetic condition that distorts the fetal face, sometimes severely. Some children with Goldenhar, like James, are born missing an ear or part of an ear (he had only the right lobe). Some have bulging eyes, or no eyes at all. James’s jaw was undersized and skewed. He underwent 35 surgeries, including one to construct his right cheekbone using bone shaved from his ribs. He pulls up his shirt to show off slashing scars across his ribcage.
     “I used to tell bullies I was mauled by a tiger at the zoo,” he says.



        The first time I walked through the corridors of the Craniofacial Center, on the University of Illinois at Chicago’s medical campus, I had to sit down. Not that I was going to faint, but the immediate possibility occurred to me. So I filled a paper cup with water and carefully lowered myself into a chair.
     And that was before meeting any patients. Seeing the mute plaster moulds of cleft faces, the blindly staring glass eyes and the little pyramids of false noses was enough. A baby’s hand, made of silicone, grasped at the air.
     That was 15 years ago. I’m not sure whether I was more or less scared of people with disfigurements than is average. As a child I had been terrified. Even of the small square picture on page 289 in the American Heritage Dictionary illustrating ‘contortionist,’ an early-20th-century photograph of a circus acrobat, her chin propped against the back of a chair, her body twisted impossibly above it, a foot planted on either side of her disembodied head. I would turn the pages of the Cs very slowly, steeling myself.
     Most frightening of all, Cynthia Cowles, in Mrs Farmer’s first-grade class at Fairwood School, her eyes set too far apart, her nose flattened. We boys teased her relentlessly, so much that her mother phoned my mother, asking her to make me stop.
     “I felt helpless,” my mother told me, years later. “The things you were upset about, you’d open your mouth about.”



                                                                   
     Fear of people with facial disfigurements is a common phobia, yet, unlike other fears – of height, of water, of the dark – it is seldom discussed, perhaps because so much popular culture, from The Iliad to "Saw V," pivots upon this fear. Perhaps it is assumed: of course you are afraid of the man without a face. Who wouldn’t be?
     Or perhaps because, unlike fear of high places, water or the dark, teratophobia – fear of disfigured people or of giving birth to a disfigured baby, literally ‘fear of monsters’ – has a living object: the injured, burnt, unusual-looking people themselves. Drawing attention to the flinching reaction they often receive, the stares and mockery that are a routine part of their daily lives, can seem an additional cruelty, the sort of vileness enjoyed by schoolyard bullies.
      Why are distorted faces so frightening? Freud classified certain objects as ‘unheimlich’, a difficult-to-translate word akin to ‘uncanny’: strange, weird, unfamiliar. Waxwork dummies, dolls, mannequins can frighten us because we aren’t immediately sure what we’re looking at, whether it’s human or not, and that causes anxiety. A surprisingly large part of the human brain is used to process faces. Identifying friend from foe at a distance was an essential survival skill on the savannah, and a damaged face is thought to somehow rattle this system  

    Psychologist Irvin Rock demonstrated this in his landmark 1974 paper "The perception of disoriented figures." Rock showed that even photos of familiar faces – famous people like Franklin D Roosevelt, for instance – will look unsettling when flipped upside down. Just as, if you tip a square enough it stops being a square and starts becoming a diamond, so rotating a face makes it seem less like a face. The mind can’t make immediate sense of the inverted features, and reacts with alarm. A bigger change, such as taking away the nose, transforms the face severely enough that it teeters on no longer seeming a human face at all, but something else.     
     That isn’t a theoretical example picked out of the air. On another visit to the Craniofacial Center, I enter Seelaus’s examination room to be introduced to a patient. He turns in the chair, and is missing the middle part of his face. There are four magnetic posts where his nose will go, and below it, a void revealing smooth yellow plastic. My eyes lock on his eyes, I shake his hand and say some words.
     A half-hour later, standing on the elevated train platform, I still feel… what? ‘Harrowed’ is the word that eventually comes to mind. Why? There was no surprise. I’m no longer a child but an adult, a newspaper reporter who has spent hours watching autopsies, operations, dissections in gross pathology labs. I was expecting this; it’s what I came here for. What about his face was so unsettling? Maybe seeing injured faces compels an observer to confront the random cruelty of life in a raw form. Maybe it’s like peeling back the skin and seeing the skull underneath. Like glimpsing death. Maybe it touches some nameless atavistic horror. That’s as far as I get before the train arrives and I get on.
                                                                              


     

     Randall H James was born in Ohio in 1956. His first surgeries were done over the next couple of years at Cincinnati Children’s Hospital by Dr Jacob Longacre, a pioneer in modern plastic surgery.
     “He was like a second father to me because I saw him so much,” says James, who didn’t celebrate a Christmas at home between the ages of 3 and 13. School holidays were for operations. Summers too.
     When little Randy began school, his teachers in the city of Hamilton made a common mistake, the sort of automatic connection between inner person and outer appearance that has been the default assumption since history began.
     “The teachers assumed I must be stupid,” says James, who was put in a class with children who had learning disabilities – until teachers realized that he was actually very bright, only shy, and missing an ear, which made it harder for him to hear. He was allowed to sit in the front of the room, where he could hear the teacher, and his grades soared.
     Doctors constructed him a large, puffy, vaguely earish appendage. It looked like a coil of dough, like a boxer’s cauliflower ear. It wasn’t much help.
     As a student at the University of Kentucky, James applied to be a residence hall adviser, someone who assists other students in navigating dorm life. The supervisor who rejected him candidly told him that his odd-looking ear could put others off.
     “‘You might make the students nervous,’” James recalls him saying, then paused, the pain still obvious after 40 years. “These were my classmates.”
              


Plaster casts of soldiers disfigured in World War I
     We are a society where people thrive or fail – in part, in large part – because of appearance. The arrangement of your features goes far in deciding who you are attractive to, what jobs you get. Study after study shows that people associate good looks with good qualities, and impugn those who aren’t attractive. Even babies do this, favoring large eyes, full lips, smooth skin. Billions of dollars are spent on plastic surgery by people who are in no way disfigured, just for that little extra boost they feel it gives to them, gilding the lilies of their attractiveness.
     How do people with unusual appearances fit into such a world? For most of recorded history, children born with disfigurements were wonders, portents or punishments. If they were allowed to live. “A couple hundred years ago, people born with craniofacial conditions, they were just putting them in a bucket of water,” said Dr David Reisberg, an oral plastic surgeon at the Craniofacial Center.
      But even then, astute observers saw beyond externalities. Michel de Montaigne in 1595 encountered a child conjoined to the half-torso, arms and legs of an undeveloped twin (what we would now call a parasitic twin), displayed by its father for money. Montaigne noted: “Those that we call monsters are not so to God, who sees in the immensity of His work the infinite forms that He has comprehended therein.”
     Adults were another matter. Those who came upon their distinctive faces later in life were seen as having been dealt their due, either through heroism in battle – dueling scars were so fashionable in 19th-century Germany that young men would intentionally wound themselves – or through the outward manifestation of inner sin. Plastic surgery began its first, faltering steps as a separate field of medicine after Columbus brought back syphilis from the New World in the 1490s, the injurious effects of which include destruction of the nasal cartilage. Soon silversmiths were fashioning metallic noses, and surgeons were cutting triangular flaps from patients’ foreheads and twisting them to form rudimentary new noses. Sometimes that even worked.
     The twin impulses, to conceal and to correct, have been competing ever since.
      Perhaps the most surprising thing about the history of plastic surgery is how old it is. The use of the term ‘plastic’ to describe a type of medical operation was popularized in German surgical texts in the 1820s, long predating its 20th-century use for the synthetic material.
     British doctors in 19th-century India advanced plastic surgery while trying to repair the noses and lips local warlords cut off as a mark of disgrace. But plastic surgery truly entered the modern age after World War I.
     Trench warfare created facial injuries with a grim efficiency. The trench protected your body and the helmet protected your head, saving your life but not your face. Historians estimate that 20,000 British soldiers returned home with mutilated faces after the War. Society wrestled with contradictory impulses: to seek them out and to shun them. The scarred faces of soldiers were highlighted in books and exhibitions, both to show off what was possible through modern medical technology and to act as a cautionary tale of the horrors of war.
     Yet in Britain there were also schemes to segregate those with facial injuries in their own villages, to keep them out of sight.
      In the 1920s, almost every café in Paris had its pensioned veterans. “Croix de Guerre ribbons in their lapels and others also had the yellow and green of the Médaille Militaire,” Ernest Hemingway notes in A Movable Feast. “I watched… the quality of their artificial eyes and the degree of skill with which their faces had been reconstructed. There was always an almost iridescent shiny cast about the considerably reconstructed face, rather like that of a well packed ski run, and we respected these clients.”
     Sir Harold Gillies set up his famous hospital during World War I in Sidcup, a small English town, which soon found itself populated by servicemen having their faces rebuilt. Certain park benches were painted blue, as a code to the townspeople to brace themselves for the patients who might be sitting upon them, and thus not be startled as they approached.
     This ‘startle’ reaction is a cause of much distress, both for people with disfigurements and for those they encounter, who must compress the lengthy adjustment period that recovering patients themselves go through into a moment, and tend not to do it well.
     Until not so long ago, those reluctant to see people whose appearances stray beyond the range of the usual actually had the law on their side. Many cities in the United States had ‘ugly laws’ designed primarily to reduce public begging. Chicago’s law read:

     Any person who is diseased, maimed, mutilated or in any way deformed, so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares or public places in this city, shall not therein or thereon expose himself or herself to public view…
     The law was not repealed until 1974.
                                                                             



     “So Randy, can I take your bar off?” says Rosie Seelaus. James has a white gold C-shaped armature permanently fixed to the side of his head, anchored to his skull with gold screws. The prosthetic ear snaps onto the bar. “I’ll take your bar off so I can make the substructure. At lunch we can look at images we have.”
      It is Monday. James is in Chicago for the entire week, having his new ear created. Seelaus removes the screws and lifts the metal structure from the side of his head, the first time it has been taken off in seven years, since he decided to replace the crude ear surgeons had created for him with a prosthetic.
     “If this were fitting well we could use the same mould and just replace the silicone,” she says of James, who has lost 24 pounds, which threw off the fit of his ear. “But since it’s not fitting well, we’re going to be starting from scratch and redesigning… Tomorrow will be mostly sculpting his ear.”
      This involves a range of high-tech gear. A CT scan is taken of his left ear. A computer then creates a mirror image of that scan, which a milling machine uses to carve a right ear out of a block of dense blue wax. Seelaus takes this prototype and makes a second, skin-toned ear from softer dental wax, which she puts on James to adjust its form and fit. A colorimeter and a spectrophotometer are used to gauge exact color values.
     “Color is essential to having a successful prosthesis outcome,” says Seelaus, who spends hours matching shades, then fitting James’s ear to his head – even the most perfect, natural-looking ear will fail if there’s a gap between it and the wearer’s head. When she’s done, the ear is then pressed into dental stone to create a mould that she fills with silicone to make the final ear. She mixes liquid pigments into splashes of clear silicone, colors she dabs into clear plastic, which she holds against James’s head, trying to match his skin tone. Seelaus doesn’t pour the colored silicone into the mould; she paints it in, layer by layer. To imitate tiny veins, she uses strands of red and purple yarn.
     Matching the appearance of each individual is crucial. She has, for instance, created ears that were partially burned, to match scarring on a burned face.
 
Rosie Seelaus
    “This is a full-life journey for these patients,” says Seelaus, who has done this work for 16 years. “I’m still learning from patients about what their life experience is and how it changes. Being born with a facial difference becomes a life journey that has a lot to do with acceptance. I’ve learned with patients who are burn survivors – not victims, survivors – initially their relationship with the prosthesis changes, too, throughout their lives… What I try to tell them is, they’ve been through a lot already, it will also take adapting to the new way they look.”
     How people fare on this journey generally depends on what they start with. “It’s about your self-perception before the incident,” Seelaus says.
     And self-perception really matters. A Dutch study in 2012 looked at how well people with facial disfigurements functioned socially, finding that their satisfaction with their appearance was more important than the objective severity of the disfigurement.
     Not that living with a face that is far beyond the mainstream is ever easy, or purely a matter of confidence. It isn’t. It’s a struggle, Seelaus says, requiring courage and endurance.
     “People who sit in this chair are survivors,” she says. “They don’t come to me in this chair without having survived something, and often it’s a lot. It takes resilience to get through the treatment. And what they’ve been through living day-to-day in society takes a resilience we may never understand if we don’t go through that. Burn survivors have a resilience that is phenomenal. The reality is, it can happen to anyone. And so maybe that will bring about compassion.”





     Is greater public compassion on the way? Stares and thoughtless comments are a daily part of life for people with disfigurements. But there are many groups that have long suffered abuse at the hands of society but are now better accepted. Is there any hint that those with damaged faces are traveling the same path that, say, people with Down’s syndrome are taking towards being more fully welcomed and integrated by society?
     “People would really have to change a lot to make facial deformity the new normal,” says Kim Teems, Communications and Program Director at FACES, the National Craniofacial Association. “It’s a very hard thing to go through, not only being looked at strangely, but all the pain of surgeries.”
     Based in Tennessee, FACES started in 1969 as the Debbie Fox Foundation. Fox has an important if forgotten role in the glacial social progress of people with disfigurements. She was born in Chattanooga, Tennessee, on 31 December 1955, with a massive cleft from her upper lip to her forehead, her eyes pushed to the sides of her head: basically a hole where her face should be.
     “Her parents resigned themselves to raising their youngest daughter as a hidden child – secluded from outside eyes,” a newspaper account noted.
     Fox said she had never seen her own face until she was eight years old and found a hand mirror. She screamed in terror. “So that was what I looked like,” she wrote in her 1978 autobiography, A Face for Me. “That was why I couldn’t play with the other children, go to school, go to church, run into the store to buy candy or ice cream. All these things had been forbidden to me.”
     By third grade she attended school via telephone hookup, standing to recite the pledge of allegiance with classmates she’d never met. When, at age 13, she was driven to Atlanta for reconstructive surgery, it was the first time she had left her hometown, the first time she had eaten in a restaurant — in the back, at off hours, but in a real restaurant.
     It was also when “the girl without a face” caught wider public attention. The magazine Good Housekeeping ran a story about Fox in 1970 that showed her only from the back, a squeamishness that the media still struggle to overcome. Seeing people different from oneself can be a helpful step towards accepting them, but for people with disfigurements, public visibility has been slow in coming. Some progress has been made, though. Esquire magazine put a soldier missing both legs and an arm on its cover in 2007, and in 2010 featured inside a straight-on photograph of the film critic Roger Ebert with most of his lower jaw removed because of salivary gland cancer.

                


     Randy James is not optimistic. As someone who not only wears an artificial ear and has sprays of scars under his jaw, but also is a doctor working with veterans whose faces have been damaged by war or illness, he doesn’t see much improvement in how society views people with facial disfigurements.
     “In some ways it’s worse,” James says. “With the rise of social media, you can be an anonymous bully. If you’re not attractive, in many ways you’re not going to be successful in society.
     “I was working at St Mary’s Medical Center in Huntington, West Virginia. I had just gotten my [prosthetic] ear right before I started there. Had I not had my new ear, which really changes my appearance, would they have made me one of their poster boys promoting their hospital? I can pretty much guarantee they wouldn’t have done that if I had my old ear.”
     Some disagree. Just as World War I injected people with disfigurements into the general population, so have a dozen years of warfare in Afghanistan and Iraq, and this new generation of veterans is having an impact on how those with a wide variety of severe injuries are viewed.
     “With our current conflicts, we’re seeing injures far more catastrophic than we used to see,” says Captain Craig J. Salt, a plastic surgeon at the US Naval Medical Center in San Diego, California.
     “Massive tissue destruction, horrific burns… The combination of the level of destruction with amazing lifesaving capability of the front lines gives you a patient population who would not have survived in the Vietnam era… We have people entering rehabilitation horrifically disfigured in significant numbers.”
     Salt, who led the Navy’s effort to begin treating facially wounded veterans with the same team approach used for treating cleft palates, says, “My impression is society is more accepting and more aware of the magnitude of injuries our soldiers and sailors, marines and airmen are coming back with. They’re more accustomed to seeing disfigured patients because of media awareness, with social media… people might be a little less shocked to see a disfigured patient.”
     Soldiers in Britain echo Salt’s sentiment. “Since I was injured five years ago, the profile of disability and injured service personnel has grown massively,” says Joe Townsend, a Royal Marine who lost his legs to a bomb in Afghanistan.
     “Unfortunately, a lot of that’s down to the growing number of guys and girls coming back from Afghanistan with life-changing injuries, but the progress made by charities and the awareness on the television has really helped to educate the general public… Before, I’d walk down the street and I’d notice people looking at me, but it’s pretty much an everyday occurrence to see someone injured now.”
     Townsend says this in Wounded: The legacy of war, a coffee-table book of beautiful, fashion-style photographs of wounded British soldiers, taken by the rock singer Bryan Adams.

                   



     It is tempting to point books such as Wounded, and other popular-culture treatments of disfigurement, and aggregate them into a sign of progress. Wonder by R J Palacio is a young-adult book that tells the story of August, a ten-year-old with severe facial differences trying to adjust to school life for the first time. “If I found a magic lamp and I could have one wish, I would wish that I had a normal face that no one ever noticed at all,” August confides, on the first page.
     And these works do have an impact. Wonder was on the New York Times bestseller list for 97 weeks. Even a decade ago, a child such as Mary Cate Lynch, three, might seldom have gone out in public. She was born with Apert syndrome, an extremely rare genetic condition that affects her head, face, feet and hands. But today, Mary Cate has her own cheery website, introducing her with photos and video. Her mother, Kerry Lynch, has taken her to 80 Chicago-area schools to present a program, often tied to the class reading Wonder, that explains Apert syndrome.
     “Every parent does what they think best,” says Lynch, a nurse. “I thought the best thing I could do is to educate others so they wouldn’t be afraid of it. Fear comes from the unknown. I just thought if I could tell others about it, show them that, yeah, she’s a little bit different, but she’s more similar. If I could explain what these differences are, be very candid about it, that’s what I could do to help her in her life.”
     Society takes a long time to accept people who look in any way different. Many Americans thought Irish immigrants, as a class, were ugly when they migrated in numbers to the USA in the 1850s, mocking them for their features, holding them up as signs of congenital inferiority. A few decades later, they marveled at how much these same Irish immigrants had somehow changed – “even those born and brought up in Ireland often show a decided improvement in their physiognomy after having been here a few years,” Samuel R Wells wrote in the 1870s, making the common error of confusing a shift in one’s own perception with a change in the object being perceived. Irish faces didn’t actually change; the American public’s antipathy did, slowly and without their even being aware of it. 
Changing Faces poster

     Awareness of the challenges facing people with facial differences has not yet grown enough to smooth the path of any given adult walking into a restaurant or any given child showing up on a playground. But the seeds of improvement are definitely being planted. In Britain, the group Changing Faces put posters of disfigured people on the London Underground. Its founder, James Partridge, read the noon TV news in London for a week in 2009 to show that, while delivering information may be monopolized by the beautiful, it doesn’t have to be.
    “Are things changing?” says Partridge, who was severely burned in a car fire at age 18. “I think it’s very much about where you look… In 2008 we launched our campaign for face equality. We started public awareness, putting posters up, saying, ‘Have a look at these characters, they’re okay.’
     “We definitely had an impact… [though] outside of the confines of Britain, much less. Though in Taiwan there is a Facial Equality Day in May. In South Africa, the message of facial equality is very easy for them to pick up. I think it’s such a simple concept, the prejudices we need to attack.”

  

     In 1998, the Italian fashion company Benetton ran a series of ads featuring people with disabilities. The ads awakened the guilt I still felt about Cynthia Cowles. I realized we had some unfinished business. I tracked down her phone number and called her, writing about our conversation in a Chicago Sun-Times column published at the time.
     Talking to Cynthia was awkward for the first five seconds. Then we were old classmates, laughing and sharing stories. She said she had seen me interviewed on TV.
     “You still play with your shoelace when you’re nervous,” she said.
     I was nervous now. I told her I was sorry for being mean to her in grade school.
     “If you were mean to me, there were so many other people who were so much worse,” she said. “I recall you as being one of the kinder people. You were the one in eighth grade who came to visit me in the hospital – you told me your mother made you come, but you stayed a half-hour, very uncomfortably – and brought a box of stationery.”
     I have no memory of that, though spilling the beans about my mother’s command was exactly the sort of dopey, over-honest thing I would say, then and now. She recalled feeling sorry for me.
     “You got teased for being fat, and got teased because you couldn’t skip,” she said, recounting how the gym teacher tried to drill me into skipping.
     After we caught up – we both had got married – I asked her something I had always wondered about. What exactly was the cause of her disfigurement?
     “I was basically born without bone in my nose, and the front of my forehead was not closed,” she said. “I’m hydrocephalic, which means my head is bigger than it should be, which put pressure on my brain.”
     She had more than 60 operations. “Now I’m done,” she said.
     We laughed a lot, particularly when she told a story about dealing with her tormentors. “My mother always thought if you ignored it, it would go away,” she said. But that only went so far, and one day she turned around and socked a kid who was teasing her, then was terrified because she realized the assistant principal had been standing right there and saw her.
     “But he just gave me the thumbs-up sign, and said, ‘If you didn’t, I was going to.’”

               



     On Friday, Seelaus heats James’s new ear in an Imperial V Laboratory Oven, then, wearing light-green oven mitts, removes the cylindrical mould. After it has cooled, she pries the sections of the mold apart. “Look at that,” she says, brushing away excess silicone, then almost sings, “I think that looks pretty goooood.”
     She lifts out a startlingly human-looking ear. With a few trims and a touch of color here and there, she attaches it to James’s head. From two feet away you can’t tell it isn’t a natural human ear. James is delighted. “It looks a lot better, huh hon?” he says to his wife, who has come to see the final result. She later pronounces the new ear “sexy”.
     Seelaus gives him some practical care tips. Keep away from solvents, small children and pets – animals like to chew silicone. The ear will sink. “If you go swimming, if you’re in the ocean, wear your old ear,” she says. “Don’t put it on top of a radiator or toaster oven.”
     I estimate the ear costs $10,000 – its fabrication took up most of Seelaus’s working week – and she does not contradict me. I also observe that Seelaus must be one of the few artists who hopes that her work goes entirely unnoticed by the public, and she doesn’t contradict me about that, either.
     Happy though he is with his improved appendage, when I ask James if I could take a picture of him wearing his new ear, he refuses. He says he is worried, not about the photo’s appearance on Mosaic, but that it might later be lifted and included in some online “hall of monsters”. I ask several times in several ways, reassuring him that in my view this is highly unlikely. His answer is always the same: No. A reminder that looks are always relative, always only part of the story, and that our reaction to them fills in the rest.
     There is no such reluctance with Seelaus’s next patient, Victor Chukwueke, a Nigerian-born medical student with neurofibromatosis, a disease of rapidly growing tumors that crushed his jaw, distorted his face, and left his right eye an empty hollow. He is here to get a new false eye and surrounding socket, to help put his future patients at ease. Even without a prosthetic, however, with a scarred void where his right eye once was, he smiles and poses as I click away.
     Seeing people with disfigurements is important, because once a person, or a society, becomes familiar with them, apprehension fades. Just a couple of weeks before, I had needed to steel myself, sitting in my car in the parking lot of the Loyola University Medical Center, on my way to interview burn survivors, actually saying out loud, “If they can live it, I can see it,” to gather my courage.
     But by the time I meet Chukwueke, that trepidation is gone. I had asked Seelaus to send me a photo of him, so I could prepare myself ahead of time, but she didn’t, and I go in cold. Hurrying into the Craniofacial Center, I spot a man who is obviously him, plop into the chair next to him and introduce myself, and we immediately begin to talk. His speech is sometimes hard for me to understand, because of his damaged jaw, so I have to lean in very close, our noses inches apart, as we talk to each other. It seems the most normal thing in the world.
     Chukwueke puts his situation neatly into perspective.
     “We all have an issue,” he says. “We all go through things in life, go through difficulties. You don’t have to let your challenges bring you down or let you be sad and depressed. It’s a matter of perspective."


VOICES


                   
Jamie Nieto: “Oh man, I’m going to be ugly”

             


Jamie Nieto, 31, works as a golf pro at a suburban Chicago resort. He speaks with a gravelly voice, the result of inhaling flame.


     The injury happened 8 November 2003. It was the morning of my 20th birthday… I decided to do some yard work. I had cut down a tree, and figured I’d burn some logs, but got too close to the can of fuel.
     When it first happened, in all honesty, the first thought I had after I got put out, maybe even when I was on fire… was, "Oh man, I'm going to be ugly." Not that I was an Adonis before it happened.

Were you right?

     I guess it’s all a matter of perspective. I really didn’t get to see what I looked like until… I got a glimpse of my face in a car window as I was going to the ambulance; it was all red and skin falling off and there was no indication what I would look like post-surgery…
     I didn’t see what I would look like until [two months later at the Rehabilitation Institute in] the elevator and a mirror in the corner and I finally caught a glimpse and I was kinda stunned… Got in the bathroom of my hospital room and just stared in the mirror for what felt like an eternity but may have only been five minutes… It was hard to look at because it was still real fresh, the scars were very immature… red, healing. I was a big glowing face… My ears were gone, my nose was pulled up, my mouth was barely there… It was overwhelming. It was a lot.

What’s it like to live with now?

     Stares are constant. Every day. I work in a business where I meet 150, 200 new people a day. Some of them may not notice, or not pay attention. I’m fortunate my facial scarring blended in. Sometimes people won’t know. I’ll be behind the counter, checking in a golfer, and you can see, it’s like “Oh”… I know it’s not a negative reaction. There’s more of, “It’s not something you see every day.” Someone will ask what happened. I’d rather them ask than stare and form their own opinions or stories of what might have happened.
     I have no problem talking about it. Kids are fine; they’re curious. Adults are the worse ones. They’ll do the stare, the double-take… They’re the ones who should just come up and ask. Kids will make funny comments and I make a joke back to put them at ease. I’ve had kids ask, “Are you wearing a mask?” and I’ll say, “Yeah, one that I can’t take off.” Then I try to use it as a teaching tool too, I say, “This happened because I was in a fire” and go into fire safety with them.
     I’ve been dating the same girlfriend at little over three years… I had it in my head, “What woman would find me attractive?” Scars on my face, scars on my chest… But I was already defeating myself before even talking to a woman. My girlfriend now doesn’t even notice it. She finds me attractive.
     Not to say there’s not negative feedback, but it’s few and far between. In the place I worked at before, a couple guys, behind my back at first… would call me “Crispy”. They didn’t think anything of it, because they knew I’m so easy-going about it. But that’s something that kinda stung… I said “Guys, that one’s not cool.”


Edward Schrank: “I was already like this”
         


Ed Schrank, 38, was a technical sergeant in the United States Marine Corps. He is missing his left eye and part of his face surrounding it because of tear-duct cancer. 

     I grew up in rural Illinois. I was never very much about physical appearance. Young people who look good… they care about physical appearance. Young people who rebel, they also care, the kids who are wearing all black. I was neither of those.
     My older brother was a popular guy. It never occurred to me to look a certain way. My hair was weird. I just wasn’t a member of trends… It was never about fitting in, or rebelling.

Why did you join the Marines?

     I was bored. It was the first thing I ever did to not do everything my brothers did. Before then all I ever wanted to do was what they did.
     I joined the Marines, this is 1996, and I just travelled. I did a “hardship tour” – you sign these contracts, they would give you extra money. That’s what I wanted to do. Imagine someone paid you extra for what you wanted to do. What a cool, badass word [hardship]. You get to go to places in the world where no one wants to go to. I liked ’em. I liked being in the middle of the desert somewhere.
     I was a high-performing Marine. I was selected for some programmes that made me feel like I’d really accomplished a lot. Then all of a sudden, if you haven’t been to war, you weren’t shit in the Marines. So all the things I had done were now meaningless. I was like, “I gotta go.”
     I got hurt in Ramadi [in 2006]. Then they found a brain tumour. I was supposed to die that year… I had this extremely rare, extremely slow-growing brain tumour… It actually started in the tear duct, then it spread through the nerves and ended in the brain, over the course of a couple years. I have brain damage because of it… I have a fake skull.

Why not continue reconstructive surgery or wear a facial prosthetic?


     I didn’t care. People used to talk to me [about having more surgery]. I didn’t make a big moral stand, like “No! I’m going to go with my appearance and I’m going to be stronger for it.” It wasn’t that hard for me because I already had this personality.
     I had 17 goddamn surgeries over four years. You think I want another fucking surgery? Who the fuck does that to themselves? Fuck you. For what? I got surgery to save my life. I am the most radiated person in the history of medical radiation… Separate teams from Harvard, the University of Chicago and Northwestern saved my life multiple times. Now you want me to do more medical care so that I look nicer? FUUUCK YOU! It is so offensive to me. And this person is looking at me because they care about me. They think they are helping me… I didn’t grow stronger. I was already like this.


Victor Chukwueke: “I’ve learned to accept who I am”
              


Victor Chukwueke, 29, was born in south-eastern Nigeria. His jaw was slowly crushed by the swelling tumors of neurofibromatosis, which makes his speech sometimes laborious. 


     I grew up in a very small village, Ezere. Around 300, 400 [people] but no running water, no electricity. I don’t remember not having the tumor. As I was growing, it was getting bigger. I didn’t have access to medical treatment. So the tumor was left unchecked.
     Growing up, I didn’t want to look different. I just wanted to look like other kids. Sometimes I didn’t want to go outside. People staring at you. Some kids make fun, I feel a little bit ostracized. Some people don’t understand this disease. They think it was a curse.
     My parents heard about the nuns. I was brought here [to Michigan] by Catholic missionary nuns. They brought me here in 2001 from Nigeria… I stayed with them and had nine surgeries.

You went to community college for two years, then Wayne State University, where in 2012 you were selected to give the commencement address. What are you doing now?

     I’m in medical school at the University of Toledo, just finishing up my second year. It’s challenging. It’s going well, you just have to put in the effort. I have some friends, we play soccer, ping pong.


What’s it like being stared at?

     It reminds you. It reminds you that I have an issue. That I have a problem. A group stops what they’re doing and starts staring at you. They are shocked. I’m getting used to it.


When you see yourself in the mirror, what do you think?


     I've lived all my life kind of like this, so I’ve kind of accepted who I am. My biggest worry is how I think people will see me, that’s what I’m worried most of all. Especially now that I’m trying to become a doctor. I’d like to see patients, so I’m more worried about how comfortable they're going to be.

Is that why you wear a facial prosthetic?


     I’m trying to make others feel comfortable, especially my patients.

How do you feel about interacting with patients for the first time?

     I’m confident in my ability. Just a little bit apprehensive. I’m sure that people will understand.

Victor has set up a humanitarian foundation and hopes to become a medical missionary.